The following lists palliative care research primarily conducted by Australian research groups. The list is based on application of the CareSearch search filter for palliative care to identify articles held within the PubMed database and corresponding to the strongest evidence. Articles have been selected based on relevance and new articles are added on a weekly basis.
Whilst not an exhaustive list, the aim is to keep the community informed by providing a snapshot of recent research findings and planned studies in the Australian setting.
Blythe R, White NM, Brown C, Hillman K, Barnett AG.
Background: The Clinical Frailty Scale is an ordinal scale from 1 (very fit) to 9 (terminally ill) commonly used to assess frailty in older patients. It is simple for clinicians to apply and can help identify patients who may benefit from discussions around end-of-life care. We externally validated the Scale to assess its performance for predicting 90-day mortality in a cohort of admitted older patients who had screened positive for being at risk of nearing the end of life.
Methods: We used data from a randomised controlled trial assessing a tailored feedback loop for reducing non-beneficial care. Our study included patients aged 75 and above admitted between May 2020 and June 2021 from 3 Australian hospitals. We assessed whether the Scale could be used in a frail population to identify patients who were at risk of short-term mortality. Predictive performance was assessed using the c-statistic, smoothed calibration curves and decision curves. Models were tested for coefficient stability.
Results: Our dataset contained 4639 patients and 956 deaths within 90 days. The Clinical Frailty Scale had a c-statistic of 0.62 (95% CI 0.60 to 0.64) or 0.63 (95% CI 0.61 to 0.65) by adding age and transforming the Scale using a cubic spline. Risks were underestimated without a non-linear transformation as scores of 8 and 9 had a higher risk that diverged from a linear association. The net benefit of using the tool was greatest between 5 and 8 on the Scale.
Conclusions: The utility of the Clinical Frailty Scale may be as a flag to encourage clinicians to become more comfortable with discussing ageing and death, rather than as a highly discriminating model to classify patients as high risk or low risk. Statistical uncertainty over mortality should not be a barrier to initiating end-of-life care discussions with frail older patients.
Collier A, Appachoo S, Frey R, Jones V, Birtwistle J, Allsop M, et al.
Background: Telehealth palliative care delivery has been shown to be feasible and acceptable for patients, families and clinicians across a number of contexts. However, the rapid implementation of telehealth during the pandemic exposed both challenges and opportunities for optimising telehealth integration in palliative care. This study capitalised on clinicians' experience to better understand the complexities of telehealth and palliative care with a focus on access and equity.
Methods: We deployed a qualitative interview study exploring Australia and Aotearoa New Zealand (NZ) clinicians' perspectives of telehealth with a focus on underserved palliative care populations. The study was underpinned by applied critical realism evaluation. Data were analysed through an equity lens using Srivastava and Hopwood's framework, applying critical realist evaluation questions: what are these data telling us about what works, for whom, in which contexts and with what outcomes?
Results: We recruited a total of twenty-two participants [doctors (n = 7) nurses (n = 11) allied health (n = 4)]. Fifteen participants were based in Aotearoa NZ and seven in Australia. Analysis resulted in the following four key themes: Extending the reach of palliative care; Underserved groups - the thin line of equity and access; Patient safety and quality- the complexities of clinical work; Tele-care, connection and creativity.
Conclusions: Our findings show that although the adoption of telehealth can extend the reach of palliative care, there is, at the same time, the potential to further marginalise those for whom palliative care is already inaccessible. Support and education for clinicians are needed to ensure safe and high-quality telehealth, as well as organisational guidelines and structures to optimise the use of telehealth. There is a need for further research using ethnographic, participatory as well as other qualitative and quantitative methods to identify approaches that optimise access to palliative care and telehealth for underserved groups. This should include the perspectives of patients and families themselves.
Objective: This study used the Supportive Care Needs Framework (SCNF) to examine the psychological well-being of caregivers of children with dementia and their experiences navigating health and disability systems, including financial hardship.
Methods: Caregivers and bereaved caregivers, whose child died from a dementia, completed an online questionnaire and semi-structured interview. We adopted a convergent, mixed-methods approach, combining quantitative and qualitative results to enhance the interpretation of caregivers' experiences and priorities.
Results: Seventy-six caregivers completed the questionnaire, 19 of whom had more than one child affected and 15 of whom were bereaved caregivers. Eighteen caregivers (14 females/4 males; 7 bereaved/11 non-bereaved) participated in interviews. Quantitative data highlighted elevated psychological distress, with 70% scoring moderate-to-severe anxiety, 30% meeting criteria for severe pre-loss grief, and 39% of bereaved caregivers reporting severe, prolonged grief. Integrated qualitative and quantitative data underscored that insufficient psychosocial services and inadequate information navigating and accessing essential health and disability services markedly exacerbated caregiver distress, especially in the context of their child's multifaceted, complex, and progressive needs. We identified key domains evidencing caregivers' unmet needs and priorities, emphasizing the urgent need for specialized models of care and tailored family-centered psychosocial supports, responsive to the fast-changing and progressive needs of children and families.
Conclusions: Caregivers of children with dementia experience critical unmet needs and shoulder enduring burdens throughout the course of their child's progressive decline and following bereavement. Coordinated centers of expertise, equipped to deliver expert medical and integrated psychosocial support, are essential to more effectively support families affected by childhood dementia.
Sher J, Aradhya G, Lei A, Zhangchen B, Grant L, Pullen S, et al.
Background: Supportive care is a commonly provided health service for people with cancer, but less is known about how this model of care is implemented in populations with non-malignant, but life-limiting chronic conditions.
Methods: A search from 2000 to February 2024 was performed on four electronic databases targeting supportive care studies in adults living in Organisation for Economic Co-operation and Development Convention countries who had cardiovascular, respiratory, renal, hepatic, neurological or genetic (Huntington's disease and cystic fibrosis) chronic conditions. Data were extracted relating to the type of condition, the supportive care aim, whether the care was spiritual, psychological, social, informational or practical in nature and details relating to replication in a clinical setting.
Results: From 124 full text articles assessed for eligibility, 33 studies (39 reports) were included, representing 3701 participants. Supportive care was most described for people with neurological (n=10, 30%) and renal (n=10, 30%) conditions. The most common aims of supportive care studies related to symptom management (n=12, 36%), decision making (n=6, 18%) and reducing health service utilisation (n=5, 15%). The supportive care provided predominantly took the form of educational/informational (n=25, 76%), practical (n=21, 64%) or psychological care (n=20, 61%). Provision of spiritual care was described least often (n=7, 21%). Multidisciplinary teams commonly provided the service via face-to-face meetings or telephone calls.
Conclusions: This scoping review shows that a variety of supportive care interventions addressing a range of life-limiting chronic conditions exist, with a common focus on education and symptom management. Current gaps are indicated in the provision of social and spiritual support.
Close E, Downie J, White BP.
Abstract: Canada's federal monitoring system for medical assistance in dying (MAiD) commenced in 2018 and was expanded in 2023 to enhance data collection. This article sought to understand the role of monitoring in the regulation of MAiD in Canada. It reports on qualitative interviews conducted with 68 participants from two key groups: MAiD assessors and providers; and "organizational actors" from a range of bodies including government, regulators, professional organizations, and healthcare organizations. Participants' views of the monitoring framework for MAiD were analyzed. There was consensus that monitoring should be distinguished from oversight. Participants thought the monitoring system provided important transparency into MAiD practice but emphasized mitigating burdens on practitioners, where possible. Methods of data collection varied, and a pan-Canadian approach was challenging. Participants had different views about the appropriate scope of data. The article concludes with recommendations for effective monitoring of assisted dying practices.
Last updated 30 April 2024